News about Long Covid including its relationship to ME/CFS 2020 to 2021

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I get this on a lot of nights when I go to bed, it feels as if the blood pressure in my arms is markedly different from that in the rest of me.

It can become very intense if ignored.

It does happen at other times but when in bed, trying to get to sleep, it's much more difficult to deal with, and get to sleep.

It's the main reason I have to take painkillers.

(It's noticeable now, sitting up on the sofa, but in this position it largely doesn't interfere with what I am trying to do.)
 
obeat said:
Would it not be sensible to store longitudinal blood samples as part of Janet Scott's study? @Tom Kindlon
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It would definitely give useful data. However, if it wasn't part of her initial plans, it might add a lot to the costs.
Anyway, I don't think I will get involved in passing on specific suggestions to her, at least at this stage. I think you are on Twitter, so you could always reply to her under her tweet that mentioned me.
 
Mij said:
@Wonko do you feel like there are rubber bands wrapped around your arms?
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Not noticeably no.

It's more like enough blood doesn't get through my shoulders, leading to low pressure in my arms - buzzing, a type of pins and needles I suppose, initially just in my palms and fingertips. constriction around the top of my biceps, altered sensation from there upwards to my shoulders that after a few minutes is perceived as pain - there's more but that's the basics.

It starts with the buzzing in my fingers/palm, and an 'odd' sensation in my shoulders, and escalates.
 
Lily Valley said:
What me and my husband are having now is symptoms from the infection reappearing
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but presumably your tests show that you are 'free' of the virus. The same as when I had some virus followed by pneumonia; ie the tests were negative, the x-ray was clear, and yet I was still having symptoms (not just 'fatigue') months later and subsequently diagnosed with PVFS. Which is exactly how acute onset ME develops.
 
Sly Saint said:
but presumably your tests show that you are 'free' of the virus. The same as when I had some virus followed by pneumonia; ie the tests were negative, the x-ray was clear, and yet I was still having symptoms (not just 'fatigue') months later and subsequently diagnosed with PVFS. Which is exactly how acute onset ME develops.
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I’ve had glandular fever, my ME got much worse after that. This is something else. Too soon to say it’s ‘post’ about a totally new virus or to compare to other ‘old’ viruses. And in what way our bodies will be chronically affected and when (if). The most common symptom (and damage to) is from the lungs.
 
Some of the accounts of post covid-19 patients and their flare-ups/relapses remind me of ME. It will be interesting to see if they recover completely after six months. If not, it might be that they, like us, have permanent post infection complications, PEM - exertion bringing on a repeated worsening of symptoms.

Their symptoms are related to the type of infection with covid-19. If they end up with PEM- ME experience, I find that interesting in that it would explain how those of us with ME can have some different symptoms to each others experience due to the type of infection or causative experience that caused the onset of their ME but are still experiencing PEM?

I haven't read all this thread so please excuse me if I am way of beam of what has already been discussed.
 
Being as cynical as possible:

With examples of post-viral fatigue it seems that most go on to eventually recover, while some do not. A potentially disadvantage (for us) of people adopting a label like PVFS/ME/CFS early on is that we could then be flooded with anecdotal reports about how doing [whatever they were doing at the time] led to recovery from PVFS/ME/CFS.

Hopefully those suffering long lasting symptoms from COVID-19 will be particularly likely to go on to recover, but given the problems surrounding PVFS/ME/CFS research, I can see that almost any outcome could end up being viewed in a way that causes problems for other PVFS/ME/CFS patients. We know that some less than impressive people with a history of spin are now getting funding for researching this area.
 
Not sure whether this has been posted. The Open Medicine Foundation are planning a post-Covid-19 / ME study.
From an email:
OMF Funded Study: COVID-19 and ME/CFS
Against the backdrop of COVID-19, Open Medicine Foundation (OMF) remains focused on finding the answers needed to win the fight against ME/CFS and other chronic, complex diseases. Today, because of the pandemic, an opportunity exists to increase the understanding of ME/CFS.

OMF is proud to announce a multi-year collaborative effort to unlock the triggering mechanisms of ME/CFS revealed through the study of post-COVID-19 patients. At the heart of this effort is the leveraging of the strategic relationship between our four Collaborative Research Center (CRC) Directors.

In the coming months, we will share details about the study and its progress. We will also continue to expand our efforts to raise the significant funding required to conduct this international study and to sustain the over thirty research and treatment projects currently underway at the four, OMF-funded CRCs.
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Conversion of COVID-19 patients to people with ME/CFS

"We are proud to announce the initiation of a study of patients with COVID-19 to monitor the course of their disease and its sequelae (the medical term for chronic conditions after an illness) to ascertain whether they convert to ME/CFS and if it occurs, to study the molecular transformation.
This will involve the collection of body fluid samples at frequent intervals, continuous health monitoring via wearables, and symptom data recorded at many separate time points over two years. The expected outcome is that some will develop ME/CFS, as many other viruses serve as triggers for the disease.
The COVID-19 pandemic is an unprecedented opportunity to study the biological factors that may determine or predict the development of ME/CFS.
In a significant percentage of patients, severe viral infection preceded their development of ME/CFS. In this current COVID-19 pandemic, it seems likely that COVID-19 may also be a trigger, and that many people will develop ME/CFS.
It is thought that up to 11% of patients who had severe infections from Epstein-Barr virus (EBV), Q fever (Coxiella burnetii), or Ross River virus (RRV), and others, develop ME/CFS. Other studies following SARS and MERS suggest an even higher proportion (50%) develop ME/CFS or Fibromyalgia.
After COVID-19 patients recover from the acute phase of their disease, they may be at significant risk for a prolonged period of post-viral fatigue, which may last six months or more before returning to their previous normal state. However, for some patients, their fatigue may fail to resolve or become even more profound over these initial six months and continue indefinitely, converting to ME/CFS.
A detailed genomic, metabolic, and proteomic analysis over time will likely provide tremendous insights to understand how to identify those pathways that can be useful to predict, diagnose, or treat ME/CFS.
The world is intensely focused on COVID-19 at the moment. The likely conversion of thousands of patients to a disease that causes life-long suffering provides a unique opportunity for the world to finally pay appropriate attention to ME/CFS."
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Esther12 said:
Being as cynical as possible:

With examples of post-viral fatigue it seems that most go on to eventually recover, while some do not. A potentially disadvantage (for us) of people adopting a label like PVFS/ME/CFS early on is that we could then be flooded with anecdotal reports about how doing [whatever they were doing at the time] led to recovery from PVFS/ME/CFS.

Hopefully those suffering long lasting symptoms from COVID-19 will be particularly likely to go on to recover, but given the problems surrounding PVFS/ME/CFS research, I can see that almost any outcome could end up being viewed in a way that causes problems for other PVFS/ME/CFS patients. We know that some less than impressive people with a history of spin are now getting funding for researching this area.
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I'm concerned about this too. Like pre covid when so many people say "I had ME for 4mnths/1yr after 'X', but then they took more vitamins/did more exercise/pushed themselves/went cold water swimming/various woo practices.... and so clearly that is the cure for it. When the most likely thing is that it was self limiting anyway.
I hope all these suffering people will recover, but now it's been linked to ME/CFS, what will happen to us as a result of them recovering, when they do.
 
Maria1 said:
The most notable thing for me is that everybody is noting that protracted COVID symptoms are exacerbated by exertion. These symptoms include chest pain, breathlessness, sore throat, muscle aches, dizziness, fatigue, increased temperature, malaise, and a whole range of others.
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Is this exertion in the physical sense only, or exertion in the ME sense, e.g. holding a conversation, watching TV, trying to do a puzzle as well?
 
"The most notable thing for me is that everybody is noting that protracted COVID symptoms are exacerbated by exertion. These symptoms include chest pain, breathlessness, sore throat, muscle aches, dizziness, fatigue, increased temperature, malaise, and a whole range of others".

Sounds like post viral syndrome. Why is this notable? PVS can last for months.
 
Wits_End said:
Is this exertion in the physical sense only, or exertion in the ME sense, e.g. holding a conversation, watching TV, trying to do a puzzle as well?
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FWIW:
I do little work now and stop before the brain fog sets in. I have learnt that I am OK mid-morning and later in the afternoon, and rest in between. I have stopped watching online streaming and TV, changed the playlists from trance to dreamy vibes.
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https://blogs.bmj.com/bmj/2020/05/19/paul-garner-covid-19-and-fatigue-a-game-of-snakes-and-ladders/
 
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